Today's highpoint was the return of James' smile! It hasn't made an appearance since he went in for surgery nearly 3 weeks ago. It was so great to see him smile...it even made me cry, but I blame that on the pregnancy hormones.
James has been taking anywhere from one-tenth to one-fifth of an ounce at each "feeding" with speech and occupational therapy this week. He had to do a swallow study today to see if he could be released to eat at home. The swallow study takes a bunch of x-rays of his mouth and throat while he eats to make sure that all the food is going down the right pipe. They tested him on formula and on solid foods (rice cereal & applesauce). He failed with the formula...it went down his airway and he didn't cough it back up (he has a weak gag reflex from all the tubes in his mouth as a newborn). So we aren't allowed to give him any bottle feedings at home. He did pass with the solids, so we can give him baby food at home. James will have to repeat the swallow study in one month to see if he passes with formula then. The speech therapist says that eating solids will help build his swallow strength (he has a delayed swallow with liquids). What really sucks (sorry, but it does) is that he can't get off the J-tube until he's up to 32 ounces of formula per day and he can't improve his bottle feeding skills if he's not allowed to take a bottle. It's disappointing because I was expecting him to be "all fixed" after surgery, but we still have a long road (and a lot of tubing) ahead of us.
The best news...James is scheduled for discharge on Monday!
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I'm so sorry to hear about the swallowing issue! Thin linquids are definitely the hardest to control in your mouth. Did the therapists say anything about trying thickened liquids through a bottle? I know that might be tough too, because you would have to have a bigger opening in the nipple which means he would get more liquid in his mouth at one time. The thickened liquid moves slower in your mouth, though, which would help with his delayed swallow. I know it's disappointing, but keep in mind how awesome he is doing, considering he has not eaten by mouth his whole life!
ReplyDeleteThat smile would make any momma cry after all you've been through. Keeping you all in my prayers and hope the tubing goes away quickly!
ReplyDeleteWe can do thick liquids (1T Rice to 1 Oz. formula) by spoon only. No bottle :(
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